Tag: Cancer Recurrence

Month 78 – Discussion with the Doctor

On By DanIn Prostate Cancer1 Comment

Another monthly post a few days ahead of schedule…

One thing about getting care through the Veterans Administration (VA)—I may see the same doctor only twice before a new one takes over my case. I think they’re on a six-month rotation and I’m on an four-month test cycle. Sometimes, I find the constant change in physicians annoying; other times, I like the idea of a second, third, or fourth opinion for differing perspectives.

This afternoon, I met with Doogie Howser, M.D. to review my PSA results from April. (Okay. He wasn’t actually Doogie. He’s a resident from University of California San Diego and didn’t appear to be much older than Doogie.) He was quite sharp and familiar with some of the more recent research and studies that have been done.

The meeting went pretty much exactly as I expected it to go:

  1. No real explanation for the yo-yo PSA readings.
  2. No need to panic yet; we’re not approaching the 0.2 ng/ml recurrence threshold.
  3. Slight concern about the last two consecutive readings increasing.
  4. Keep retesting on a four-month cycle.

And that was that.

I’ll go for my next blood draw in August with the follow-up appointment with Doogie (or his replacement) in September.

You may have noticed that I now have links to my Facebook and Google+ pages in the sidebar and footer in an ongoing effort to continue to raise awareness by sharing my story with a broader audience.

Day 2,343–A Struggle

On By DanIn Emotional Aspects, Prostate Cancer15 Comments

I’m surprised by how much getting my PSA results 30 hours ago affected me yesterday and today. It’s been a real struggle.

Anger. That’s the word of the last 24 hours. I just want to scream, “Would you make up your fucking mind already?!?! Either come back and let’s battle this cancer shit head-on, or get the fuck out of my life once and for all!!” (Told you I’m pissed.) It’s the uncertainty that comes with each test result that’s getting to me. And the fact that this will happen every four months for the foreseeable future is growing really tiresome.

Logic tells the data-driven part of me that I’m okay—that I’m still considered to be cancer-free for now. It’s probably because I am so data-driven that I’m getting so angered and frustrated. Cancer doesn’t always follow a logical path; it doesn’t always fit neatly into cells in a spreadsheet. I need be better at accepting that fact. (You would have thought that I would have learned this after 6+ years of dealing with this.)

Cancer sucks.

Sorry if I offended with my language, but when I started this blog, it was intended to be a raw sharing of thoughts and emotions, and it’s something that I needed to do today, otherwise my head would explode. Really.

And, no, I’m not wishing for the cancer to come back. I’m grateful that I’m still here and able to whine about it. Truly. I guess frayed nerves, anger, and frustration are small prices to pay for longevity.

 

 

Month 77–The Results

On By DanIn Prostate Cancer1 Comment

The results are in. My latest PSA is 0.08 ng/ml, up from 0.06 ng/ml in December. That’s exactly where the trendline on my geeky spreadsheet graph told me it would be, so I’m not entirely surprised. Not pleased, but not surprised.

What does all of this mean? Who knows. On the good news side, I’m still well below the historically accepted 0.2 ng/ml cancer recurrence threshold. But I’m at the point now where I can no longer convince myself that these elevated PSA readings were just a byproduct of the change in PSA test methodology in March 2015. I’m sensing that something real is afoot here, and it doesn’t bode well.

My appointment with the doctor isn’t until 9 May 2017, so I’ll have plenty of time to think about this in advance and have a battery of questions ready for him. We’ll see if we’ll stick to the four-month test cycle or if he wants to increase the frequency. If we stick to the four-month cycle, my trendline would predict the next PSA to be between 0.09 and 0.1 ng/ml.

The last time we met, the doctor wasn’t willing to act until we got closer to the 0.2 ng/ml threshold. I’ll see if this result changes his opinion or if he’s been more accepting of some of the more recent research on prostate cancer recurrence. (You may recall from some of my earlier posts that several studies using the new ultra-sensitive PSA test showed that crossing the 0.03 ng/ml threshold was predictive of cancer recurrence and that intervention with salvage therapies sooner rather than later was more effective.)

I’m not going to pretend that this isn’t troublesome for me, because it is. But I also know that it’s still too early to go into full panic mode. If we stick to the four-month test schedule and August’s results come in at 0.07 or above, that will be one more data point to reinforce the notion that the cancer is, in fact, on its way back. At least in my mind. If it comes in less than that, I’ll be both happy and frustrated because of the continued uncertainty as to what’s really happening.

The journey—with its sometimes insufferable waiting—continues.

 

This Test Can Tell If Your Prostate Cancer Will Come Back

On By DanIn Prostate Cancer, ResearchLeave a comment

I came across this interesting article late tonight talking about how, if your post-treatment PSA nadir after RT or ADT is greater than 0.5 ng/ml, you’re more likely to have the prostate cancer return.

I’m going to re-read this with a fresh set of eyes tomorrow to better understand the study and its details.

http://nbcnews.to/2jIKECd

Life After Radical Prostatectomy: 72 Months Later

On By DanIn Life After Prostatectomy, Prostate Cancer6 Comments

So it’s been 72 months since my radical prostatectomy. How am I doing?

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Graphic Biology Ahead

Status

Since my 66-month update in July, we learned that my PSA continued to play yo-yo by dropping from 0.08 ng/ml in April to 0.05 in August and 0.06 in November. So I’m still hovering well below the 0.2 ng/ml widely accepted recurrence threshold. That’s good.

Emotions

The emotional roller coaster that I was on at the beginning of my elevated PSA trip has really subsided into the kiddie version of the ride. Sure, there are things to be concerned about, but the initial panic and fear over the possibility of recurrence are gone.

Incontinence

My weight loss of 100 lbs. / 45 kg at its best point certainly helped reducing my incontinence. (I’ve sadly put about 8 lbs. / 3.6 kg back on thanks to the stress of our stupid election and the holiday feasts at Thanksgiving and Christmas).

What I find is that when I’m physically active or when my body is tired is when I’m more inclined to have small episodes of incontinence. At the beginning of December, we had an event at work where I was on my feet for 12 hours and doing a lot of lifting at the end of the day cleaning up after the event. By the end of the night, my underwear were damp from seepage that I never really felt as it was happening. (I generally don’t wear pads because 99% of the time, I’m dry.)

Knowing that I already have some incontinence when active is a concern if we ever get to the point of salvage radiation therapy, as SRT tends to worsen incontinence.

Sexual Function

Really not much has changed in the sexual function department in the last year or so. With only one nerve bundle, I’m pretty pleased with the fact that I can achieve a decent erection 80-90% of the time, but it does require some effort. (And I’m not taking any ED drugs like Cialis or Viagra.)

Earlier I talked about penile shrinkage after the surgery, and I’m happy to say that things are back to where they were before the surgery. I’m not sure if that’s the norm, but I’ll take it (even though it took years to get back here).

Summary

As I was wheeled into the operating room six years ago today, I had to have a little fun with the surgical team. I stopped them and said, “I just need to know one thing before you start.” “What’s that?” my surgeon replied. “Are all of you over your New Year’s hangovers?” When they laughed and said, “Yes,” I said, “Good. Let’s do this.”

Here I am, six years out from the surgery, still kicking and getting along fine for the most part. Sure, this elevated PSA is a concern, but I’m not going to live my life from PSA test to PSA test. It’s just too draining to do that. As I said at the beginning of this journey, I’ll just do my best to take things one test result at a time and go from there.

I’ll continue to stay plugged into the prostate cancer community to keep abreast of the latest research so that, if and when my elevated PSA ever becomes more than a nuisance, I’m educated and ready to make decisions that are right for me and my desire for quality of life.

 

Immediate radiation when PSA levels spike after prostate cancer surgery helps reduce risk of recurrence

On By DanIn Prostate Cancer, Research3 Comments

It’s funny that just 24 hours after having a discussion with my doctor about this very topic, this article appears on one of my social media news feeds.

My medical team seems reluctant to embrace some of the newer studies like this, sticking to the 0.2 ng/ml definition of biochemical recurrence that’s been the standard for years and years. That makes me wonder how long it takes before the medical community accepts the newer data and studies, and shifts treatment regimens to the new guidance.

Don’t get me wrong. I’m not ready to hop on a table and get radiated just because of this paper (or the two others earlier in the year along the same lines), but it is something that I’ll be keeping an eye on going forward.

More than anything at this point, I’m just sharing an observation of how the medical research community and the medical community at large can sometimes be at odds with each other, knowing how conflicting and confusing it can be from a patient’s perspective. It just reinforces my belief that you have to do your own research, be your own advocate, and make decisions that YOU are comfortable with based on what you’ve learned.

—Dan

For men who have had prostate cancer surgery, radiation therapy at the first sign of a rising PSA level can reduce the chances of the cancer recurring.

Source: Immediate radiation when PSA levels spike after prostate cancer surgery helps reduce risk of recurrence

Day 2,241–Doctor’s Visit

On By DanIn Prostate Cancer7 Comments

My visit to the doctor this afternoon to review my latest PSA results (0.06 ng/ml) went just as I expected it would:

  1. There’s no definitive explanation for the elevated PSA yet.
  2. The elevated PSA seems to be stable, so no need to panic about recurrence.
  3. Retesting in four-month cycles will continue for the foreseeable future.

I’m okay with all of that. I seem to have turned the corner where I’ll always be concerned about my PSA, but I’m not going to let it control my life. It’s too consuming.

He reminded me of how slowly PSA can change and that we shouldn’t even begin to think about any intervention unless the PSA starts creeping up into the 0.15–0.18 range. That’s fine by me. If we get to that point, I’m going to be much more deliberate in selecting what, if any, salvage therapy would be appropriate given where I’m at in life and the potentially debilitating side effects that impact quality of life.

So I’ll call that visit a positive end to 2016. Let’s hope for a happy, healthy 2017!

Day 2,212 – PSA Results

On By DanIn Prostate Cancer11 Comments

My latest PSA test on 28 November came back at 0.06 ng/ml, up slightly from the 0.05 ng/ml back on 1 August.

That could just be the difference between a new moon and a full moon or simple instrument error. It’s a concern, but certainly nothing to panic over at the moment.

I’m glad to see that I’m consistently hovering in that 0.04–0.08 range, although, if I were to lay a trendline over the data, it would certainly be moving in an upward direction towards that recurrence threshold.

The one nagging thing that hangs over my head is those recent studies that showed PSA at 0.03 ng/ml can be predictive of recurrence. I’ll press the doctor on that again at my appointment on 29 December.

Lastly, I’ve accepted the fact that this will be my new reality: Testing, waiting, and wondering every four months. Not the path I hoped to be on six years out, but it is what it is.

Thanks to everyone for your thoughts, support, and prayers.

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Six Years

On By DanIn Prostate Cancer2 Comments

Six years ago today, I was told I had prostate cancer. Guess what? It’s six years later and I’m still alive and kickin’. Woo-hoo!

PSA Trend 20160803Of course, the cancer storm clouds may be brewing as I head into my next PSA test in a few weeks. Who knows what crazy result it will yield. Remember, in the last 15 months, we’ve gone from undetectable to 0.05 to 0.04 to 0.08 to 0.05. Any bets on the results this time around??

My schedule in early December is quite hectic, so I’ll likely go for the blood draw during the week of 28 November. As usual, I’ll wait three days to get the results online, and then my appointment with the urologist is on 29 December.

Stay tuned. In the meantime, here’s wishing everyone a Happy Thanksgiving with family and friends!

Day 2,113 – A Visit with the Urologist

On By DanIn Prostate Cancer, Recurrence4 Comments

Well that went just as I expected it would:

  • No explanation as to why my PSA is where it’s at and why it’s doing what it’s doing (yo-yo readings).
  • No willingness to state with any certainty whether I’ll experience biochemical recurrence (BCR) at some point in the future.
  • No meaningful discussion of next steps until we know what we’re dealing with.
  • Retest PSA in December.

So we go back into the wait, retest, and wait some more mode for the foreseeable future. I guess that’s okay, but I’m a pretty binary guy, so it really would be nice to know that, yes, the cancer is coming back or, no, it’s not. At least then you can work to come to terms with the answer even if it’s the one no one wants to hear.

We did talk some about using other imaging mechanisms to see if they can pick up on any micro-metastases if the December results are worse than where we’re at now. We also talked a little about salvage radiation therapy, hormone therapy, and the timing of each but, again, nothing that I didn’t already know from my own research.

We also discussed the recent papers that indicated BCR at 0.03 ng/ml and, while he was interested, he pretty much stuck to the standard 0.2 ng/ml definition of BCR and would be using it in the decision-making process.

I did mention that I’m in no rush to start anything (i.e., salvage treatments) until we know exactly what we’re dealing with, and that quality of life is high on my priority list if and when we get to that point.

So that’s that. No real surprises. No real revelations. Just keep on keepin’ on.

On that happy note, remember that September is Prostate Cancer Awareness month. (Hard to believe it’s only a week away! My time flies when you’re having fun…)

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